Out-of-pocket costs near end of life in low- and middle-income countries: A systematic review

Background Globally, there is a rise in chronic disease, including cancer, major organ failure and dementias. Patients and their families in low- and middle-income countries (LMICs) pay a high proportion of medical costs out of pocket (OOP), and a diagnosis of serious illness often has catastrophic financial consequences. We therefore conducted a review of the literature to establish what is known about OOP costs near end of life in LMICs. Aims To identify, organise and report the evidence on out-of-pocket costs in adult end-of-life populations in LMIC. Methods A systematic search of 8 databases and a hand search of relevant systematic reviews and grey literature was performed. Two independent reviewers screened titles and abstracts, assessed papers for eligibility and extracted data. The review was registered with PROSPERO and adhered to the Preferred Reporting items for Systematic Reviews and Meta Analyses. The Mixed Methods Appraisal Tool was used to assess quality. The Wagstaff taxonomy was used to describe OOP. Results After deduplication, 9,343 studies were screened, of which 51 were read and rejected as full texts, and 12 were included in the final review. OOP costs increased with advanced illness and disease severity. The main drivers of OOP were medications and hospitalizations, with high but variable percentages of the affected populations reporting financial catastrophe, lost income, foregone education and other pressures. Conclusion Despite a small number of included studies and heterogeneity in methodology and reporting, it is clear that OOP costs for care near end of life in LMIC represent an important source of catastrophic health expenditures and impoverishment. This suggests a role for widespread, targeted efforts to avoid poverty traps. Financial protection policies for those suffering from incurable disease and future research on the macro- and micro- economics of palliative care delivery in LMIC are greatly needed.

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients’ symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.

Support Needs for Bhutanese Family Members Taking Care of Loved Ones Diagnosed with Advanced Illness

Background: Palliative care aims to improve the quality of life of patients diagnosed with an advanced illness and their families. Family members, who often play a central role caring for their very ill loved ones, have significant support needs. In Bhutan, where palliative care is an emerging concept, the needs of family members have not been assessed thus far. Objective: This study explored the support needs of Bhutanese family members caring for their loved ones diagnosed with advanced illness. Design: This is a cross-sectional descriptive study. Setting/Subjects: Study sites included the national referral hospital, the two regional referral hospitals, four district hospitals and Basic Health Units (Grade I and II), spread across Bhutan. Participants were recruited through purposeful and snowball sampling strategies. Data were collected from May to August 2019. The Carer Support Needs Assessment Tools (CSNAT) was used. Results: Despite unforeseen challenges, 46 family members out of 60 identified (77%) participated in the survey. Twenty-three (50%) cared for relatives with advanced cancer and the remainder for loved ones with non-malignant conditions. This study found high support needs among both groups. The priority needs included understanding their relative's illness, managing symptoms, providing personal care, financial aspects, dealing with their own feelings and emotions and knowing what to expect in the future. Conclusion: This study will help inform the World Health Organization recommended public health approach to palliative care modified to the Bhutanese context for enabling a cost-effective intervention to improve the quality of lives of patients and families.

Missed Opportunities for Compassion: A Call to Action for Incarcerated Individuals Denied Compassionate Release

In 2016, a total of 4,117 state and federal prisoners died in publicly or privately operated prisons. Each year from 2001 to 2016, an average of 88% of deaths in state prisons were due to natural causes, with more than half of those due to cancer, heart disease or liver disease, conditions for which non-incarcerated citizens often benefit from palliative care and hospice. Prisoners age 55 and older are the fastest-growing segment of the population residing in prisons, as well as those with the highest mortality rate. Compassionate release of seriously ill prisoners became a matter of federal statute in 1984 and has currently been adopted by the majority of U.S. prison jurisdictions. The spirit of the mandate is based on the idea that catastrophic health conditions ie terminal illness affect the four principles of incarceration: retribution, rehabilitation, deterrence, and incapacitation. Concerned about an aging prison population, overcrowded facilities, and soaring costs, many policy makers are calling for a wider use of compassionate release for persons with terminal illness as well as broader prison reform. The prognosticating criteria of compassionate release guidelines are clinically flawed, and the application and procedural barriers are prohibitive. In this paper we review cases of patients who qualified for compassionate release but had their applications denied. We will discuss the urgent need for access to quality palliative medicine for incarcerated persons with advanced illness and call healthcare providers to action with the aim of reducing suffering and promoting social justice for those in need.

Refractory hyperactive delirium in the dying: pharmacological management

BackgroundDelirium is a prevalent clinical presentation in advanced illness. The hyperactive phase can cause severe symptoms at the end of life. There is no published study of the pharmacological management of this symptom in Australian palliative medicine practice.ObjectivesTo describe the pharmacological management of hyperactive delirium at the end of life in an Australian inpatient palliative care setting.MethodsRetrospective audit of deaths from October 2019 where a medication of interest (MOI) was used following admission to the palliative care unit (PCU) of Eastern Health. The clinical notes of those included were reviewed to further describe the clinical details surrounding the use of the MOI.ResultsForty patients were included. Midazolam was the most common medication used (57.5%). The most common dual agent combination was midazolam plus levomepromazine.ConclusionsThis audit is the first description of pharmacological management of severe hyperactive delirium at the end of life requiring sedation in an Australian PCU.

An Observational Study to Determine Severity and Complications Associated with Non-Alcoholic Fatty Liver Disease with Special Emphasis on Riskfactors

Introduction: The clinical spectrum of NAFLD is wide extending and ranges from NAFL to NASH, advanced fibrosis, cirrhosis, HCC. It has emerged as the most prevalent chronic liver disease worldwide in adults and children's. NAFLD is commonly linked with MS such as obesity, DM, H0TN, hypercholesterolemia. Methods: This is an observational study conducted to determine risk factor, severity and complication associated with NAFLD. Data was collected from outpatient and inpatients of gastroenterology department and also through patient or care taker interview. Result: A total of 112 cases of liver disease were observed among them 61 cases were found with NAFLD. Majority of cases were examined with Grade I fatty liver. Males were more prone to develop NAFLD and the most highest prevalence was found in the age group 51-70yrs. DM is the main RF and PHTN is the common complication observed. Beta blocker, ARB, statins, are frequently observed prescribed drugs to manage risk factors and complication. Hepatoprotective drugs like ursodeoxycholic acid, SAMe are given. Conclusion: The study concluded that the prevalence of Grade I fatty liver was high followed by CLD. Further, patients with NAFLD were predominantly middle aged men, most of whom were overweight and obese. Prevalence of NAFLD appears to be substantially higher than that predicted on basis of elevated ALT levels. Male sex, BMI, abnormal transaminase level, and MS were independently associated with ultrasonographic severe fatty change. Early detection, as well as steps to prevent the condition through lifestyle modification may halt the progression of a benign disease to advanced illness. Sedentary behavior or physical inactivity is a developing issue quietly putting individuals at elevated risk.

Wish to die and hasten death in palliative care: a cross-sectional study factor analysis

ObjectivesThe wish to die (WTD) is a complex experience sometimes accompanied by intention to hasten death. The aim of this study is to identify the predictive factors for WTD and hastening death intention (HDI) in Spanish patients with advanced illness.MethodsThis is a subanalysis of a larger cross-sectional study conducted on patients experiencing advanced illness (N=201). Sociodemographic data and data related to symptom burden (Edmonton Symptom Assessment System-Revised), depressive and anxious symptoms (Hospital Anxiety and Depression Scale), demoralisation (Spanish version of the Demoralisation Scale), perceived loss of dignity (Patient Dignity Inventory) and WTD (Assessing Frequency and Extent of Desire to Die) were collected. The analysis used univariate and multivariate logistic regression.ResultsThe prevalence of WTD in the sample was 18%, with 8 out of 36 patients reporting HDI. The independent factors predictive of WTD were (1) knowledge of approximate prognosis (OR=4.78; 95% CI 1.20 to 10.8; p=0.001); (2) symptom burden (OR=1.05; 95% CI 1.00 to 1.09; p=0.038); and (3) the Demoralisation Scale subsection ‘lack of meaning and purpose in life’ (OR=1.61; 95% CI 1.30 to 1.99; p=0.000). An independent predictive factor for HDI was the Demoralisation Scale subsection ‘patients’ distress and coping abilities’ (OR=1.47; 95% CI 1.04 to 2.08; p=0.028), while having religious beliefs was a protective factor (OR=0.13; 95% CI0.17 to 0.97; p=0.047).ConclusionsDemoralisation was found to be the only common triggering factor for WTD and HDI, although experiences share certain features. Identification of the predictive factors for WTD and HDI may contribute to their prevention and management.

Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study

Background: Transitions between care settings (hospice, hospital and community) can be challenging for patients and family caregivers and are often an under-researched area of health care, including palliative care. Aim: To explore the experience of transitions between care settings for those receiving specialist palliative care. Design: Qualitative study using thematic analysis. Setting/participants: Semi-structured interviews were conducted with adult patients ( n = 15) and family caregivers ( n = 11) receiving specialist palliative care, who had undergone at least two transitions. Results: Four themes were identified. (1) Uncertainty about the new care setting. Most participants reported that lack of information about the new setting of care, and difficulties with access and availability of care in the new setting, added to feelings of uncertainty. (2) Biographical disruption. The transition to the new setting often resulted in changes to sense of independence and identity, and maintaining normality was a way to cope with this. (3) Importance of continuity of care. Continuity of care had an impact on feelings of safety in the new setting and influenced decisions about the transition. (4) Need for emotional and practical support. Most participants expressed a greater need for emotional and practical support, when transitioning to a new setting. Conclusions: Findings provide insights into how clinicians might better negotiate transitions for these patients and family caregivers, as well as improve patient outcomes. The complexity and diversity of transition experiences, particularly among patients and families from different ethnicities and cultural backgrounds, need to be further explored in future research.

Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review

Background: Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers’ attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region. Aim: To synthesize and appraise the evidence about patients with advanced illness and their caregivers’ attitudes and preferences towards palliative and end-of-life care in Latin America. Design: Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool. Data sources: MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included. Results: Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver’s role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients’ preference to be informed about their condition contrasting with caregivers’ reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general. Conclusion: Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America.